EB Ambassador Wish Campaign – Help our Butterfly Ambassadors Spread their Wings!

We are highlighting DEBRA Canada Ambassadors to help spread awareness and educate Canadians to the daily struggles and amazing perseverance it takes to endure life with EB. Deanna Molinaro, Jonathan Pitre and Kourtney Kujawa share their stories with the hopes of raising awareness and funds to help support families affected by EB. 


Deanna Molinaro's Story

 

Dear Supporters,

Thank you so much for all you have done to donate in honour of my EB Wish and the DEBRA Canada EB Ambassador Wish Program. Please note that any future donations in my honour, will be directed to the upcoming 2016 DEBRA Canada EB Ambassador Wish Campaign and will help to fundraise and assist for wishes to be fulfilled for our new 2016 Ambassadors.

I feel so fortunate to have been able to help launch this exciting Ambassador Program, and cannot wait to share with you how Jonathan Pitre and I are helping to make more dreams realized for DEBRA Canada EB patient members.

My Wish to have modifications to my truck… The 2014 EB Ambassador Wish Campaign was an enormous success I have to say, it is such a heart-warming feeling to know that my fellow Ambassador Jonathan Pitre and I have helped to launch this exciting program.

As you know, my wish was to have modifications made to my new/used truck, so that I could continue toward independence. I am so happy to tell you that my van had all the necessary modifications, and now nothing can stop me… I am on the move! I drive myself to art college in Oakville, Ontario from my residence in Stoney Creek each day and it is such a liberating feeling. Since the modifications were made I have been able to take two other RDEB patients (including my fellow Ambassador Jonathan Pitre) for a spin in my modified truck. My hope is that other EB patients will see that they too can strive toward personal independence, something that at one point in time, I never thought I could achieve.

I want to thank all of you who helped support the 2014 Ambassador Wish Campaign. Jonathan and I were completely overwhelmed by the amount of support and awareness (social media, print, and radio and TV media). We would like to thank all the media outlets, including the Ottawa Citizen Newspaper who helped launch our EB wish stories and the DEBRA Canada Ambassador Program.

I would like to specifically thank the Hyatt Family Foundation for their matching $10,000.00 contribution to the EB Ambassador Wish Program, and to the thousands of individuals and the many corporations and foundations who donated toward the success of our campaign. Please stay tuned, as Jonathan and I are very excited to help launch the 2016 Ambassador Wish Program and cannot wait to help other EB patient ambassadors achieve their wishes and fulfill their dreams.  


Jonathan Pitre's Story

“Helping people is just being human. Again, it’s not only me that feels good, the other people I’m helping will also feel this way. With all of our efforts combined, I am hoping that one day we will be able to make our world…a world free of pain.”

Dear Supporters,

Thank you so much for all you have done to donate in honour of my EB Wish and the DEBRA Canada EB Ambassador Wish Program. Please note that any future donations in my honour, will be directed to the 2015 DEBRA Canada EB Ambassador Wish Campaign and will help to fundraise and assist for wishes to be fulfilled for new Ambassadorsbecause my wish has ALWAYS been two-fold; to see the Northern Lights and to help other DEBRA Canada EB Patients achieve their dreams.

I feel so fortunate to have been able to help launch this exciting Ambassador Program, and cannot wait to share with you how I am helping to make more dreams realized for DEBRA Canada EB patient members.

My Northern Lights Trip… I just cannot wait to go! The 2014 EB Ambassador Wish Campaign was an enormous success raising just over $45,000.00 specifically to the EB Ambassador Wish Campaign program, and just over $117,000.00 overall to DEBRA Canada's programs and services.

Originally I was planning to visit the Northern lights this September 2015, but unfortunately, my medical doctors have recommended a few important surgeries, so I have had to put my plans on hold until I am well enough to travel. I will keep you all posted and want to thank all of you who helped support the 2014 Ambassador Wish Campaign. Deanna Molinaro and I were completely overwhelmed by the amount of support and awareness (social media, print, radio and TV media).  We would like to thank all the media outlets, including the Ottawa Citizen Newspaper who helped launch my EB wish story and the DEBRA Canada Ambassador Program.

I would like to specifically thank the Hyatt Family Foundation for their matching $10,000.00 contribution to the EB Ambassador Wish Program, and to the thousands of individuals and the many corporations and foundations who donated toward the success of our campaign. Thank you to all of you who sent kind notes of encouragement, well wishes, and gifts in the mail… it just blew me away!

Please stay tuned, as I am very excited to help launch the 2015 Ambassador Wish Program and cannot wait to help other EB patient ambassadors achieve their wish and fulfill their dreams. Sincerely, Jonathan Pitre


Kourtney's Kujawa's Story

Dear Supporters,

My name is Kourtney Kujawa. I am 17 years old and I have Recessive Dystrophic Epidermolysis Bullosa (RDEB). I live in Abbotsford, British Columbia with my Mom and Dad, and younger sister, Shaelyn. I attend Abbotsford Christian Secondary School and I will be graduating this year!

I have lived with Recessive Dystrophic EB for 17 years now and I have learned that there are many hardships that come along with it. For example, one of my least favourite things happens when I go out in public and experience the all famous "stare down”. Each time I go out, I feel the sting of staring eyes smacking me in the face over and over. I still continue to go out 'cause a girl has to shop till she drops!

Another struggle that I have found with having RDEB was when I was in elementary school I would always feel left out because all of the kids would be playing outside and running around. That was probably one of the hardest things for me to get over. Accepting the fact that there are some things that I could just not do.

School for me has been a rocky time. Elementary school was good; lots of friends to play with and field trips. When middle school came around, it hit me hard that girls can be mean. I began making my way down the "middle school food chain" till eventually I had no one left. I was alone. When high school started, my favourite Teachers Aid, Tammy, moved to Calgary. I was so sad that she wouldn't be able to stay with me. I also wasn't doing well physically and emotionally and was experiencing a lot of pain. I was going downhill.

At the beginning of grade 10, sickness and depression took over and I stopped going to school all together. I was admitted to BC Children's Hospital and was put on many different types of medication but nothing was working. The doctors told my parents that there was nothing more they could do so I was sent home. The house was very gloomy and somber. I was literally dying and there was nothing we could do. As my health became worse my parents took me to our local hospital in Abbotsford. I got admitted right away and the doctors did more testing and found a treatment that made a positive difference. That was two years ago and I am feeling much better now.

I have found now at an older age that I am able to accept a lot of things better than I did when I was younger. I have been through many trials and tribulations but I always manage to pull through and persevere.

The long term plan is to take half a year off to finish some high school courses. Then I would like to go to university to study psychology. I would like to live in a dorm and move out of my parents place...!